We caught up with employee wellness expert Alan Brand on how he remains ‘Positively Alive”.
Having been diagnosed with HIV in 1997, Alan Brand has become a beacon of light for many who are infected. He lives openly with his HIV status and is dedicated to making a difference by breaking the silence and changing the mindset of those he comes into contact with.
But it wasn’t always so….
How long did it take for you to break your own silence?
Today there is still a taboo about the subject of HIV and AIDS, but back in 1997 the subject was even more “in the dark”. Most of the information that was available was aimed at scaring people into using condoms and preventing the transmission of the infection, rather than being useful on what to do if you have it. If I had asked for information, that would have signalled to others (and to myself) that I had HIV – and I wasn’t ready for that. So I kept quiet, which I think is what many people still do, but that has dire consequences
What were the reactions from your family and your work colleagues?
In December 2000 on World AIDS Day I disclosed my status to my daughters. I remember being very aware that I could not simply tell them and then leave them in a vacuum. They needed to have the opportunity to express their feelings, ask questions and deal with their own emotions to help them to cope with this news. Surprisingly they both very quickly told me that they love and support me and I am sure their response greatly added to my wellness at that time. Breaking the silence within my working environment received mixed reactions, but on the whole I mostly received care and support. Because I had forgiven myself, I was able to face any possible rejection.
What was your first step towards healing?
Two years after being diagnosed with HIV (1999), I started to develop tumours and mouth sores – it was a particularly stressful time at work. I went to see a doctor and subsequently found out that my CD4 count was in the low 200s. The shock of being told that I would die in less than 18 months if I didn’t start taking Antiretroviral (ARV) medication finally made me confront the biggest stigma – my own attitude. Self-acknowledgment of my status was my first positive step towards healing. I wanted to live and I wanted to live well. My silence to that point had denied me access to information and healthcare. It’s a lot different nowadays as more people are open about their status and there are more facilities to help, but the main step towards healing is still accepting and then forgiving yourself.
How do you get your ARVs? (Clinic, private doctor, pharmacy? And what is the procedure you undergo when you get them? Do you buy yours or are they free?)
I am fortunate that I am a member of a medical aid and am registered on the HIV and AIDS management programme. The medical aid I am a member of uses the Aid for AIDS programme and hence I am able to get my ARV’s through the programme and they are part of my chronic disease management benefits. For a long time I used to collect my ARV’s from a local pharmacy and the cost is covered under my chronic benefits and does not come from my medical savings. At the moment the medical aid uses a courier service to deliver my ARV’s to me monthly. An important part of this process is seeing my HIV clinician every 5 months to monitor my immune health and side effects.
When do you take your ARVs and have you ever skipped?
As I only have one kidney I am on a specific ARV regimen that does not put pressure on my kidney and hence am taking pills twice per day and am not on the one pill a day ARV. I take my medication on time every day at 8am in the morning and again at 8pm at night. Having a family that supports me in this process and setting my mobile phone to remind me are all useful tools that make this possible.
Do your family members remind you – are they part of the process?
Indeed I believe that having family support is crucial to maintaining adherence. Taking medication secretly would result in one not being successful and forgetting to take your ARV’s
You talk about “Knowing your Numbers” – please explain why this is important
Monitoring my health not only my CD4 and viral load and taking action when and if there are any side effects from the ARV treatment but also making sure I “KNOW MY NUMBERS” in respect of my body mass index (BMI), cholesterol, sugar levels, blood pressure etc. ensures that I am able to address any health issues with a proactive approach.
Does living with HIV mean no relationship?
I am in a loving relationship and have been for the last 18 years, with an HIV negative partner. This is testament to the fact that Antiretroviral Therapy, coupled with good nutrition, has enabled us to have a healthy and normal sex life without the fear of transmission of my virus to my partner.
Any final tips for our readers?
Don’t be afraid to test. Knowing your HIV status is no longer a death sentence: like many other health conditions, testing and screening is the first step to living a healthy life. Knowing your status is empowering. You will be able to gain knowledge and interact with medical practitioners who specialise in HIV treatment: providing you with the correct antiretroviral medication is key to your survival. It also means you will be able to find psychological support through support networks and groups, which will enable you to take responsibility for your life. Not knowing your status denies you the ability to make these important choices and is simply foolishness.
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